The ALS Association's Patient Bill of Rights for People Living With ALS

Introduction

The Amyotrophic Lateral Sclerosis Association (ALSA) prepared the Patient Bill of Rights to inform people living with ALS about their rights related to health care and health plan insurance coverage.* ALSA encourages people living with ALS to participate in the process of managing their health care because patients who are informed and empowered gain the greatest benefit from the health care system.

In order to navigate the health care system, patients need to understand their rights and obtain current, understandable information about ALS, the treatment and prognosis. In today's health care climate, cost control measures in most health plans present challenges to patients and their family members. The patient or his/her advocate should be proactive by appealing for and interceding to reach a solution if a person's health or safety is jeopardized by health plan policies, coverage limits, exclusions or restrictions.

Eight of the eleven rights are protected by law or federal or professional regulation. The three rights that are not protected are identified in this brochure with a parenthetical "not protected" reference.

While issues of cost and access in our society and health care system present barriers to achieving these rights, these barriers should not prevent the clear expression of the rights of people with ALS and the values these rights represent. ALSA's Patient Bill of Rights creates a vision of what the ALS community is striving to achieve for each person living with ALS.

* The term health plan is used throughout this document and refers broadly to indemnity insurers, managed care organizations, self funded employer-sponsored plans, Taft-Hartley trusts, church plans, association plans, State and local government employee programs, and public insurance programs such as Medicare and Medicaid.

---

Finding Inspiration in the Fight Against ALS

On February 3rd, 2008, the New York Giants, led by Eli Manning, walked on the field at the University of Phoenix Stadium in Phoenix Arizona, to overcome one of the biggest challenges in the team's history. Entering the post season with a 10 and 6 record, the Giants were the obvious underdog. Reporters, fans and the other teams gave them very little odds to make it through the post season. The Giants prevailed and reeled in four straight wins to make it to the championship game. In each of the games, they were overmatched but they prevailed. In the end, the Giants were ready to face their undefeated opponent. They were ready to fight for the impossible.

As the whole nation knows, the Giants gave the New England Patriots their only loss for the season. The Giants were the champions!

There was no miracle and there was no magic behind this win. The Giants as a team decided to work together, learn everything they could about their opponent and fight together to overcome the odds.

The Giants success in the Super Bowl can inspire us all to overcome the obstacles that we are faced with on a daily basis, even ALS.

Imagine yourself as the quarterback and your family, friends, coworkers and clinical team as your team. Once you have your team, you won't have to fight ALS alone. Find strength in every one of your teammates and utilize these strengths to make your team a solid and strong structure.

You can all work together to gain knowledge and come up with a game plan for your fight against ALS. Attend ALS Clinic, participate in support group meetings, go to ALS Symposia, be aware of clinical trials and stay up to date with research news. Familiarize yourself with symptoms before they arise and prepare yourself and your team for when they do. By doing this, you can maintain control of your life instead of letting ALS take control.

Rally your team together by attending the Walk to Defeat ALS, becoming an ALSA Advocate and by staying involved in your community. Doing this will not only help to raise spirits and provide motivation, but you can meet other PALS and talk with them about their strategy for living with ALS. Incorporate some of these strategies into your team’s game plan.

Keep your spirits up, eyes and ears open and live to win. Never stop educating yourself and gaining knowledge about your opponent. Find inspiration everywhere and use that as motivation to stay in control of your life. Remember the Giants and how they never gave up, even when the rest of the nation did. Never give up and be a champ!

For more information about living with ALS and patient programs, contact the Patient Services department at 800.672.8857.

---

Be Proactive! - Insurance and Big Ticket Items

There are two big ticket items that most patients with ALS (PALS) will obtain through the course of their disease - a power wheelchair and an augmentative and alternative communication (AAC) device.

Power Wheelchair
The constantly changing needs of PALS can make finding an appropriate wheelchair a challenge. Most insurance companies follow Medicare guidelines in regards to type of wheelchair and required paperwork. Some private insurance companies follow different guidelines for power wheelchair coverage, so make sure you check your coverage before you purchase anything!

For most PALS, it is not recommended to have your insurance purchase a manual wheelchair or other mobility device, as Medicare will only pay for one wheelchair every five years. If an inexpensive manual wheelchair is purchased, it may be nearly impossible to get another wheelchair from Medicare within that period of time. Fortunately, PALS have the ability to borrow items from the Chapter's equipment loan program that would prevent them from having to use their insurance coverage for this relatively inexpensive item.

It is advised that PALS use their insurance coverage for an appropriate power wheelchair, which typically costs around $15,000 - $25,000.

In order to obtain an appropriate power wheelchair, PALS should have an evaluation by a qualified professional. The person who makes the power wheelchair recommendations should have no financial incentives with regard to which wheelchair is purchased.

The process to obtain a power wheelchair from your insurance company can take anywhere from three to six months, meaning that you may have to go for an evaluation before you truly need all of the features of your power wheelchair. By beginning this process early, PALS can help to maintain their freedom once it is necessary for them to have a power wheelchair.

Being proactive also allows the PALS and their care giving team the time to calmly make decisions about what features are needed, because once the wheelchair is obtained, some things cannot be added or subtracted from the wheelchair.

Augmentative and Alternative Communication (AAC) Device
AAC devices are the types of devices that help PALS to communicate effectively once they notice changes in their natural speech.

Medicare covers the majority of the cost of AAC devices. If you are not sure if your insurance covers this type of assistive technology, call your insurance company and ask if they cover "speech generating devices." You will need to talk to a supervisor to get an answer on this because this is not a benefit that is often used. As with power wheelchairs, these are high ticket items that can range from $5,000 to $15,000.

The process for getting an AAC device is not as involved as the process for a power wheelchair, but it can take around three months to
complete.

Again, being proactive can allow PALS to make an educated choice as to what device and what features will suit their needs. An evaluation by a qualified professional will provide demonstrations of the range of devices and allow you to make your own decision as to what device best suits your needs. The evaluator should not have any financial ties to the device being recommended for your insurance to purchase.

Be aware that once the device is obtained through your insurance company, the vendor of the product or the person who made the recommendations should provide some type of training/set up for the device. Please be sure to ask the evaluator how training and set up are going to be handled.

For more information about obtaining a wheelchair or augumentative communciation device, contact Antoinette Verdone at 800.672.8857 or verdone@als-ny.org.

---

Considerations for Getting a Wheelchair

The decision to use a wheelchair is a big step for one to take. It is a big change that will take some getting used to, but is important in maintaining or increasing your independence. The process of getting a wheelchair can be confusing and complicated. Evaluations need to be made and different types of paperwork need to be filled out. For the most part your healthcare team and the wheelchair supplier will be able to help you navigate this process.

Wheelchairs can be generally separated into two different categories, manual and power. Manual wheelchairs are pushed by the user or a caretaker. A power wheelchair has an electric motor and batteries that is driven using a joystick or other access method.

There are some aspects of using a power wheelchair that are often overlooked. A power wheelchair is much heavier than a manual wheelchair, weighing upwards of three hundred pounds. Due to the weight, you cannot simply lift up a power wheelchair for access to your home or vehicle. While some models that can be disassembled, they typically cannot take specialized seating systems or alternate driving methods. Additionally, depending on how your home is arranged, you may need a ramp or elevator to access your home. If the PALS is not comfortable driving a power wheelchair, it can be outfitted with an attendant control so that a caregiver can do the driving either part or all of the time.

Unlike a manual wheelchair, a power wheelchair has batteries that need to be charged, introducing a new routine to adjust to. A power wheelchair can be used outside, but exposure to heavy rain or deep snow is not recommended. A power wheelchair must be stored inside the home. If stored outside or in a detached garage, the electronics and batteries will be severely damaged.

These factors should not discourage you from pursuing a power wheelchair. A power wheelchair can reopen a world of activities to you and your family that you may have discontinued.

Before obtaining a power wheelchair, you will need a thorough evaluation by a qualified Occupational or Physical Therapist who has experience working with patients with ALS. You can contact the ALS Association or your ALS Clinic to find out where you can get an appropriate evaluation and advice.

The ALS Association Greater New York Chapter patient services staff is available to help you discuss your options for mobility at any time. We will do our best to advise you on what types of assistive technology will suit your needs. Our Jon Stone Equipment Loan Program is available to assist patients and families when needed equipment or technology is unavailable or while you are awaiting insurance approval.

For additional questions about assistive technology or our Jon Stone Equipment Loan Program, contact Antoinette Verdone at verdone@als-ny.org or 800.672.8857.

---

Suggesting a "Future of Work" Self-Evaluation

by Barbara Bronson Gray, RN, MN

Gayle Backstrom, who wrote I'd Rather Be Working: A Step-by-Step Guide to Financial Self-Support for People with Chronic Illness, suggests that people who are grappling with issues related to their ability to continue to work consider doing a self evaluation that will help them take stock of the demands of the job - physical, mental and emotional - and their own situation physically, financially, emotionally, and mentally. For example, people with ALS should consider:

What are their physical limitations now?

• Can they use their fingers and hands or hand to pick up an object, type on a computer keyboard or calculator, operate other equipment?
• Do they have weaknesses that will limit their ability to get to work and then get to the work or office environment?
• How much weight can they lift safely?
• How long can they stand, and how far can they walk?
• Do they need a cane, walker or wheelchair?
• Do they have trouble maintaining their balance?
• Can they handle shaving, make-up and getting dressed for work?

What is their stress level and is it affecting their ability to concentrate and feel motivated?

• Do they have trouble dealing with the everyday pressures of a work environment?
• Can they motivate and lead others (if that's a part of their job)?

What is their emotional perspective?

• How are they coping with the diagnosis?
• Have they reached an acceptance of the situation?
• How is their self confidence?

What is their situation at work?

• Does the job create a sense of satisfaction and meaning?
• Do they have a good relationship with their boss or employer; are they confident that if challenges developed, they could discuss them if needed?
• Is the work something that could be done at home occasionally, part time or regularly?

How important is the job to their financial stability?

• What are the financial pros and cons of staying employed now?
• Are there milestones which, if reached, would have a significant positive impact on their financial stability (such as a stock option maturing, a bonus or commission being issued, etc)?
• If their salary were reduced or eliminated, are there other family members who could reasonably return to work to help stabilize the financial situation?

The progressive nature of ALS will require that this self-evaluation occur fairly regularly. Questions related to how and when to disclose the diagnosis of ALS to an employer and what implications that may have on their work situation should be answered by legal counsel or social workers with experience dealing with personnel issues.

For more information:

partnershipforsolutions.org: the Robert Wood Johnson project site has statistics and resources.
healthfinder.gov: a gateway site to help find health and human services information quickly.
Govbenefits.gov: an easy-to-use site that helps make it easier to see for what programs and services one might qualify.

---

Supporting Teenagers in Families Coping with ALS

It's well understood that teenagers have a unique view of the world and are dealing with what is typically a very challenging time in their lives even when all is going relatively well. Add to that having a parent or other family member with ALS and life can be absolutely overwhelming.

Surprisingly, there are not many resources specifically designed to help teens deal with serious and fatal illness of any kind. But there are some, and the experts involved have advice that may be helpful.

General advice for helping teens cope: (from the American Cancer Society)

Involvement and helping: Teens are capable of spending more time with a sick parent and of helping with some of the care. Their comfort level in doing so will depend on their relationship with the parent, school demands, and their social needs. Since teenagers are in a phase of their lives when they are naturally separating from their parents, finding the right balance between the time spent with a sick parent and time with other aspects of their lives can seem challenging. Teenagers get satisfaction from being trusted enough to help out when the family is in upheaval. But it is important to ensure the adolescent is still able to have time with their friends, participate in school activities and have parts of their lives separate from the family. It's good to check in every now and then with teenagers to see if the balance between home and the rest of their lives is being maintained.

Anger and grief: People are often angry when their world is turned upside down as it is when a loved one is dying. People may even be angry with the sick person, which can then result in feelings of guilt. Anger is a normal reaction to an unexpected loss. It is expected that older adults will eventually die. It seems unfair that parents should die before their children are raised. Feelings of rage and desperation are normal as a result. So parents should not feel that they must totally avoid the grieving process. It is OK to say to their children that it makes them angry this is happening. It also gives children permission to express their anger that Mom or Dad will no longer be there for them.

Adolescents may have a particularly tough time with the loss of a parent. If you think about what a teenager needs to accomplish in growing up, this is easier to understand. The task of the teenage years is to achieve a separate identity from their parents and discover who they are as grown-ups. This search for their identity doesn't stop once adolescence is completed. The struggles that go on between parents and their teenagers are a normal and necessary part of gaining a new identity.

Resources

General

copecaredeal.org

• Tips for teens coping with stress and big problems; offers tips on determining their personal strengths and coping strategies
• The site is oriented to teens with mental illness
• teenadvice.about.com/od/deathgrieving
  

American Academy of Child and Adolescent Psychiatry

• Good overview of stress-reducing technology in daily life, with additional information on depression, anxiety and when to seek help.
• The site is geared more to parents.
• Aacap.org/
  

Dealing with Grief and Loss

American Hospice Foundation

• For grieving teens
• Information on the uniqueness of teen grief, how to start a support group, activities that work well with teens, and when to refer to a professional.
• Americanhospice.org/
  

Vitas Hospice Care

• Teen grief: overview of developmental differences
• http://www.vitas.com/
  

GROWW: Grief Recovery Online for All Bereaved

• Offers online support groups, information
• Provides support groups for a teen dealing with the loss of a parent
• www.groww.org/aware.htm
  

Strength for Caring

• Message boards, a manual, posts of songs, poems and ideas, and a monthly newsletter
• Pertinent to teens as occasional caregivers
• Tips on communicating, coping with guilt, balancing work and family
• strengthforcaring.com
  

---

Caregiver's Month

On November 19th, 2006, ALSA-GNY Chapter's Patient Services Coordinator, Debbie Schlossberg and Tom Fraehmke, husband of PALS, Marlene Fraehmke visited 101.1 Jack FM to discuss National Family Caregivers Month with Al Meredith, Producer and Host of "Dialouge 101." Debbie and Tom spoke with Al Meredith about the programs and services of ALSA-GNY and the role of caregivers, the emotional as well as physical impact on them and where they can find support.
to listen to the interview, click here

---

Gaining Control of Your Home

When it comes to being home bound, most of your needs can be met at the push of a button. X-10 technology makes it possible for one to control home appliances, turn lights on and off, and even unlock the door all through one remote control. This technology is affordable and can be easily integrated into your home.

X-10 technology runs off the electrical wiring in your home. By
plugging an X-10 module in your electrical sockets, the device
communicates between transmitters and receivers by sending and receiving signals over the power line wiring. Basically, you command the module to tell your lights to dim; the module sends that command through your home wiring and dims the lights. Most devices that can be plugged into electrical outlets can be controlled through X-10
technology. You can purchase a universal remote control, which uses infrared technology, which has X-10 built into it.

One typically uses infrared technology to control your VCR, television, and cable. With this technology, one can turn off their lights by
sending an infrared message from their remote control to a central command center, which relays the message with X-10 to turn off the lights. This is all done by the push of a button.

Home automation can be installed using infrared technology to
control your lights and appliances, as well as unlock and open doors. In fact, higher end augmentative communication devices have infrared technology built in, allowing the user to employ the device for
communication and home automation needs.

Infrared remote controlled deadbolts and door openers are available at www.smarthome.com, along with several other products using infrared and X-10 technology that makes living at home easier.

---

Creating a Safe and Accessible Home Environment

Examining one's home environment is extremely important for a newly diagnosed patient. Falls make up nearly half of all home accidents. PALS's level of stability with walking and getting around the home is constantly changing, so if you can provide the broadest level of accessibility, you can relax and PALS can have more freedom.

There are two major rules of thumb when it comes to home modification. Energy conservation is important, and that can be achieved by putting frequently used items within reach, avoiding reaching for items, and sitting for activities whenever possible. Consideration of one's path of travel is also extremely important. One must pick up throw rugs, keep hallways and stairs clear, and make sure paths are lighted.

There are a number of simple solutions to make one's home an accessible environment. Look around and see what minor details can pose a problem, and use the tips listed below as a guide for modifying your home.

1. Doorway thresholds that are more than 1/2 inch tall should be ramped.
2. For accessibility, doorways should have a 32 inch clear width. Use offset or swing away hinges as to help uphold that clearing.
3. Invest in lever handles and key turners to make unlocking and opening doors much easier. A person who has a tendency for the high-tech lifestyle can easily open locked doors using infrared technology. For more information, visit: www.smarthome.com.
4. Installing handrails can be helpful with getting around. Be sure that there is no more than 1 1/2 inches between the wall and the inside of the handrail.
5. The use of a hand held shower head with an on and off switch makes bathing an easier task.
6. Invest in a shower seat or tub transfer bench to help conserve energy while bathing.

For those that need more than a simple solution in creating a safe home environment, several companies offer non-invasive products to make getting around the home easier.
1. For bathing, a tub slider allows PALS to roll directly over the commode to use the bathroom, as well as shower. The chair rolls over to the bathtub and the entire seat can slide over the bathtub, making bathing a less stressful experience. For more information, visit: www.pvcdme.com.
2. For those who can no longer use traditional bathing facilities, www.fawssit.com offers a self-contained portable shower stall that can be used any where there is access to warm water, a drain, and an electrical outlet.
3. A Stair-Trac allows wheelchairs to get up and down steps without having to install a ramp. The Stair-Trac is slipped under the wheelchair and rubber tracks attach to a motor to lift the chair up the steps with ease. Visit www.garaventa.ca for more information.
4. A Voyager or Easy Track makes lifting a simpler task for family members and caregivers. Using tension, the Easy Track can be installed without doing damage to the home. This device has a track along the cieling. A sling is used to transfer the patient, similiar to a hoyer lift. This device can be found at www.sunrisemedical.com.

Sometimes permanent home modifications need to be made. Common modifications include a ramp to get in and out of the home, lifts to get up and down steps, and a roll-in shower. The Greater New York Chapter offers a Home Visit Program, so our Assistive Technology Specialist, Antoinette Verdone, can examine your needs before making any home modifications.

There aren't many financial resources offered for general home modifications. Basic items like swing away hinges and lever door knobs are inexpensive, but more intricate modifications can be costly. While insurance will fund basic items such as a hospital bed and a commode, one must look elsewhere for funding for other items. Sources of funding could be Long Term Care insurance or Vocational Rehabilitation. Veterans Affairs and Rurual Devlopment offer grant opportunities. Visit www.homemods.org for more information about grants for home modification. The Greater New York Chapter has some limited items for home modification through the Jon Stone Equipment Loan Program.

---